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Complete Report Ichthyosis Focus Spring 2017 A Quarterly Journal for Friends of FIRST Volume 36, No. 2 Your Year in Review 2016 Annual Report Inside This Issue: Your Year in Review 6 Why I Fundraise for FIRST 11 30th Annual Health Leadership Conference 12 A Full House in Raleigh & San Antonio 13 IAM Worldwide 15 FY 2016 ANNUAL REPORT A Letter from Jean Pickford, CEO You, our members, are at the heart of FIRST and what inspires me to embrace everything I do with compassion and determination. Looking back at this past year, if 2016 showed us anything, it’s that FIRST is, without a doubt, resolute. The world, in so many ways, continues to rapidly change, and FIRST is poised, energized, and determined to continue to offer the most beneficial programs and services, in the most effective way possible….for you. So what’s new? With the continual challenge of a shifting and broadening terrain of healthcare technology and communications, FIRST must answer the challenge and invite members directly into our conversation to answer a singular question: How can we help to better serve you? In this issue, you’ll discover a sampling of our new integrated approach to our programs like the FIRST-hosted Live WebEx Series with ichthyosis medical experts and product developers; a patient-driven upgrade to our Life Series modules - a library addressing the care and consideration for various stages of living with ichthyosis (new parents, teens, seniors); a new product sampling program and an international Ichthyosis Awareness Month (IAM) collaboration with our partners around the globe, for the very first time. We pride ourselves in staying forward-thinking to assure that FIRST remains relevant and impactful. If you are interested in joining the conversation, please participate in one of our upcoming calls, events, or social media groups. Perhaps you are compelled to support or plan a fundraiser? There are plenty of ways to join our special family. Reach out and let me know what’s on your mind, what do you need, and how can we help? All the best, Jean Pickford A Letter from Jeff A. Hoerle, President, FIRST Board of Directors Dear FIRST Members and Friends, FIRST enjoyed an exciting 2016, highlighted by our National Conference in San Diego, which saw a record 473 attendees connect with each other, with medical professionals, and with FIRST staff. I was privileged to be able to speak with many of you—a father and son from Australia, a long-time member from Texas, a family with two affected daughters from New Jersey—hear your stories, and learn from your experience. We are all partners in our community and we are stronger through our shared engagement. During 2016, FIRST reaffirmed its commitment to engage with members and to reach as many current and new members as possible. We will do this again in 2017 with a record-breaking 13 patient support forums! Connecting provides solace and solutions; we learn best—about tips for daily treatment or advances in science—when we interact with each other. Whenever possible, I speak with individual members and their families to improve my understanding of how FIRST can make a difference in people’s lives. It is conversations with members—including my affected 10-year-old daughter Sasha—that help me get past the board strategy discussions and monthly update reviews. In one recent conversation, a FIRST member of nearly 20 years emphasized the importance of sharing insights and being able to trust the information that comes from FIRST. We aspire to meet this need through events like the FIRST to Know calls and a revamped website. Our goal is to provide as many opportunities as possible for members to connect and learn from each other. We are all experts in our own ways. www.firstskinfoundation.org 3 FY 2016 ANNUAL REPORT Letter from Jeff A. Hoerle, continued... This year, we have 11 FIRST to Know calls planned; perhaps you will have an idea for adding number 12! We care about your thoughts and can’t do it without you! Additionally, during 2016, we created a vastly improved mobile version of the FIRST website—no mean feat for a small non-profit organization. We are adding new sections and developing an upgrade to our lifecycle materials. We continually enhance our content and utilize the professional expertise of our esteemed advisors on our Medical and Scientific Advisory Board (MSAB). I thank all FIRST staff and the MSAB for your ongoing dedication and passion for the foundation. FIRST continues to focus on scientific advances and to work with leading researchers. We are playing a major role in the building of a new ichthyosis registry. Through this, the research community has access to information of which we could have only dreamed five years ago. Genetic understanding will lead to real breakthroughs and FIRST has a front row seat at the table. We also know that you want better treatments today. We have redoubled our efforts to explore new therapies and approaches that can make a difference. We learn from sharing with you, and the “Tools and Tips for Living with Ichthyosis” section on our website continues to grow—please engage with us if you have suggestions! FIRST’s mission is to educate, inspire, and connect with YOU. The more I see the committed work of our staff, the volunteers, the board of directors, and the MSAB, the more I recognize that real human connection is what matters and drives progress. We are lucky to have so many talented groups of individuals working together in a variety of nurturing and ground-breaking ways. I urge you to please join with us and engage! My best regards to you, Jeff A. Hoerle, President, Board of Directors “My daughter asked me to buy a lifetime supply! It is the best her skin has ever looked. Prior to using the Mitt she was using green scouring dish pads, loofahs and exfoliating gloves. The MicrodermaMitt is incredible! The scaling is much less everywhere...but some places, like her arms especially, look almost like normal skin.” Removes dry skin cells and scaling instantly using only water! “We have been using it about 6 days a week. It has done wonders for her! Nothing else I’ve used even comes close to getting the amount of dry skin exfoliated from her body. I’ve tried spa mitts, loofah pads, and scrub brushes. The Mitt works SO MUCH BETTER than anything I’ve used before. Since using the MicrodermaMitt, her skin doesn’t dry out as fast and she doesn’t get nearly as itchy during the day.” “The MicrodermaMitt is AMAZING!! I cannot tell you enough how happy I am that I found this mitt for my daughter. After our first bath using it, I was Before After one use speechless! Her skin was soft, smooth, shiny and so healthy looking. Her skin has been wonderful since we started using the Mitt. It looks so much smoother Discounts available by contacting FIRST @ 800.545.3286 and virtually flake free. The skin also comes off so To Order: www.MicrodermaMitt.com easy without much effort.” 4 www.firstskinfoundation.org PAID ADVERTISEMENT FY 2016 ANNUAL REPORT A Letter from Larry Silverman, CFO Dear Fellow Members, Donors, and Friends of FIRST, Congratulations to all of the staff and volunteers on another great year for FIRST, highlighted by the National Conference in San Diego. The reach and success of our organization continues to make a significant imprint on the ichthyosis community. I want to once again recognize Jean, Moureen, Lisa, Maureen and Madeline, our professional staff, for their continued commitment to excellence and their enthusiastic support to all. Our President, Jeff Hoerle, has worked tirelessly to improve the quality, stability, and support services of the organization. He, along with all my fellow board members are truly dedicated to fostering the very best results for the FIRST family. Now, to the state of financial affairs. The year has produced a great number of challenges. We saw a significant decrease in contributions over prior years and a reduction in investment income with the challenges of low interest rates. In spite of these financial hurdles, the overall health of FIRST has remained. The staff and board have made changes in order to reduce various expense areas while maintaining a high level of support for member services. We will continue to keep a careful watch on ways to keep our financial health strong as we move into the future. For the period ending September 30, 2016, net assets were down approximately $125,000 primarily caused from a decrease in contributions and investment income. Despite these constraints, we were still able to provide over $180,000 in research funding this last fiscal year. Once again, the lion’s share of contributions are spent on FIRST’s programs and services. Our Investment Committee continues to closely monitor all aspects of our progress and performance with our reserves and asset managers. Overall our financial health is strong and we have made adjustments to balance the budget for this next fiscal year. Please feel free to reach out at any time should you have any questions or concerns about our financial affairs. I wish all of you a continued year full of great health, peace, and contentment. Warmest regards, Larry Silverman, CPA, CFP, CFO, Board of Directors Financials FY 2016 FY16 – October 1, 2015 – September 30, 2016 Revenue $702,017 Expenses $976,664 Investment Income - Management & National Conference - $25,877 or 3% General Operations - Fundraising - $117,358 or $98,636 or 14% $84,819 or 8% 12% or $.12 of every dollar or $.08 of every dollar Contributions, gifts, grants - Programs, Support and $577,356 or 83% Research - $774,487 or 80% or $.80 of every dollar www.firstskinfoundation.org 5 FY 2016 ANNUAL REPORT Your Year in Review FEBRUARY 2016 FEBRUARY NOVEMBER 2015 DECEMBER 2015 MARCH 2016 OCTOBER 2015 OCTOBER 2016 JANUARY • Release the • FIRST • Another • Celebrating • The Jane and • Drs.
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